Diagnosis to now

Tuesday, August 4, 2015

Mesothelioma - Keytruda amazement!

Dose no. 7 Keytruda will be next Weds 12 August overnight in hospital. I have Keytruda every 3 weeks (this is my 20th week since commencing Keytruda). Every day I am getting stronger - it really is amazing/a miracle when I remember as to how ill/on death's door that I was earlier this year and now full of beans and enjoying quality of life once again.

Last week I ventured into the city of Melbourne by myself in the train (takes an hour) to meet up with my daughter Jo and little grandsons at a little cosy cafe and walk in the city with a walk to Federation Square and the excellent kids activities there.

Next back on the train one station to Southern Cross to meet up with Suzanne, her beautiful mum Helen and Suzanne's son Jono at the chocolate cafe for a chat/coffee. They were here on holiday from Perth, Western Australia. Suzanne's dad (Helen's husband and Jono's grandfather) died of pleural mesothelioma. Last year Suzanne was in Melbourne and we caught up with her and Linda Thomas came along too - this time Linda was in UK having a ball!

Thursday a visit to Monash hospital Clayton as Keith had a PET/CT scan (2 year's ago Keith had robotic surgery to remove his prostate due to cancer being contained there, unfortunately his PSA readings over the last few months have shown that the cancer has come back somewhere, so hence the scan. Weds (tomorrow he will see his radiation oncologist for results and probably start a regime of 7 to 8 weeks intensive radiation. He had put off having the scan/treatment since earlier this year due to my ill health at the time as for a few months he became my 24/7 carer, however now that I am improved and have not fallen off the perch, it is now time for us to concentrate on getting him fixed up)! So I jumped on the bus and headed back to Bentleigh Station shopping centre and kept out of the cold/rain/wind for the 2 hours. I enjoyed walking and wandering in and out of the little shops including 2 op shops and stopped for a coffee in Copenhagen Cafe. After the hospital visit for Keith we called into see friends who have just moved over to Australia from Thailand and their darling little girl, then stayed the night with family close by. My sister in law Cheryl cooked a lovely meal and we enjoyed a glass of wine - I am back enjoying a glass of vino - first time for months that I have even felt like it without feeling nausea coming on! Next day we took off for home - stopped at Moonee Ponds/Puckle St to have a sandwich/coffee at Cafe 21 -

great food and coffee, then while Keith sat in the car and stayed warm with his head cold, I wandered around the supermarket for provisions as I was cooking lunch the next day (Saturday) for family at home!

Friday evening I made desserts for the next day - Tiramisu, a very fiddly chocolate flan cake and steamed mandarin/fruit pudding, plus set the table for 13 including happy birthday decorations as we were celebrating 3 August birthdays! I had lots of energy to make the desserts/set the table, by 9pm I was slightly exhausted however just amazed that I could do what I did! Saturday cooked roast lamb infused with garlic/rosemary and lemon plus roast vegetables. A great luncheon and birthday celebration.

Sunday we went for a short drive then I did some gardening maintenance - /kneeling/bending to transplant violets and pulling out a few small weeds - both of which I could not have done a few weeks ago!

Monday the palliative team nurse came to visit, this particular nurse had not seen me since April when she thought that would be the last time as she knew it was just a matter of time before I would die as I was so weak, ill, sickly in colour etc. This nurse was absolutely amazed to see me looking so well and said it truly is a miracle! She could not wait to report back to the office with the good news as it is rare for them to see this happen ever! I asked her if anyone she knew was taking Keytruda (for melanoma or other cancers) she said no as it was so expensive at the moment. (Keytruda has been approved on the PBS/free list for Melanoma cancer as from early September 2015) however not for Mesothelioma cancer. However I am working on this and I will get it on the PBS for myself, and for everyone else to be given the option with their oncology team to have a choice without the expense. Good news to report back from my local Member Parliament's office - They are making representations and have had some initial contact with MSD (drug company) and are looking to have some further discussions later in the month. This is very promising! So many warriors around Australia are contacting me in the hope of having Keytruda or at least the choice however it is not an option due to the expensive costs. Our credit card is taking a battering however I have quality of life back and money cannot buy this!